The Invisible Army: Caregivers in KC

Special | 56m 45sVideo has Closed Captions

This special town hall addresses the state of caregiving in Kansas City.

06/26/2025

The Invisible Army: Caregivers in KC

Special | 56m 45sVideo has Closed Captions

This special town hall addresses the state of caregiving in Kansas City.

The Invisible Army: Caregivers in KC is a televised town hall moderated by Nick Haines that spotlights the hidden struggles of local caregivers. Featuring clips from ‘Caregiving,’ a series from celebrity actor Bradley Cooper, the town hall features expert advice, support resources and real stories from local caregivers.

06/26/2025

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The Invisible Army: Caregivers in KC is a local public television program presented by Kansas City PBS

Presenting Sponsor: AARP Kansas City

The Invisible Army: Caregivers in KC

Special | 56m 45sVideo has Closed Captions

06/26/2025

Problems playing video? | Closed Captioning Feedback

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News and Public Affairs

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The Invisible Army: Caregivers in KC is available to stream on pbs.org and the free PBS App, available on iPhone, Apple TV, Android TV, Android smartphones, Amazon Fire TV, Amazon Fire Tablet, Roku, Samsung Smart TV, and Vizio.

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PBS is bringing star power to its next big project. Bradley Cooper is known for his movies. Less known is his role as full time caregiver for his father. Dad was somebody who I idolized. I used to dress up like him when I was a kid in kindergarten, get made fun of because I wanted to wear like a suit and tie, and then to go from that to giving him a bath. Now, Cooper is partnering with PBS on a new film that tracks the sacrifices, struggles, and triumphs of caregivers across America. But it's just as much a local story. Hello, I'm Nick Haynes. We're lifting the hold on one of the most challenging and unpaid jobs in Kansas City. This hour, we take a closer look at Bradley Cooper's new film and bring together local caregivers, policymakers, and nonprofit leaders in an emotional but practical conversation filled with user friendly tips and advice on how best to navigate the caregiving journey. Everyone has a care story. Caring for our families is the most important and invisible work that we will ever do. Do you think we look alike? Hey, go! Doesn't matter who you are, where you live, what you do, where you come from. You need care how you feel this morning. And we have this invisible army who are essentially holding us all up as families and therefore holding the entire economy up. Let me paint. Dry your face. People are doing everything they can and more. And it's simply not sufficient because we need to have a recognition that care is a public good. So my dad is actually a medically retired Navy Seal, and now he's, like, helping me just get stronger. I'm here caring for two sick people, which is definitely hard. Harder than anything I've ever done in my life. There's just this simmer ring crisis. Everyone is burning out, whether it's the care worker or the family member. Everyone is under extreme duress. These are heroic people that are caregivers, period. their ability to focus and give all themselves is something that I stand in awe of by a show of hands. How many of you are caregivers in this room? A lot of you are. Can I just say, then, if you didn't put your hand up, are you just a caregiver in waiting? America is getting older. we're either going to be caregivers ourselves for an elderly loved one in the near future, or are we going to be looked after ourselves? So whether you're 18 or 88, this is a conversation that we all have a stake in. by the way, the biggest question I've been asked this week is will Bradley Cooper be here? In fact, he's not doing any of these screenings around the country. But even better news, I'm here. Thank you. Thank you. Okay. I also can sing just as well as Bradley Cooper, like you did in A Star Is Born. I'm just looking for my Lady Gaga tonight. could that be Janet Baker with the Kansas City Shepherd center? Who is with us? The Shepherd center not only provides caregiver support services, but is the largest provider of meals and wheels service in Kansas City. But that service is being cut to. We'll be hearing about that in this hour. Who says politicians can't be caring? Jalen Anderson serves on the Jackson County Legislature, a role that keeps him constantly in the news amid controversies over property assessments to the sports stadiums. Less well known is his full time caregiving role for his mother. Margery Williams knows firsthand the challenges of balancing a full time work with the pressures of caregiving. She juggled that, being superintendent of the Hickman Mills School District. At the same time, she was caring for her aging mother. And she's still doing it.

You tell me. Your mother is now going to be 97 years old. You've been doing this a long time. We're going to be hearing less. We want to keep this tight on practical tips and things we can learn along the way. And that's why we've got a lot of caregivers on our program with us. Kelly Kent, by the way, he talks a good game about telling others how they need to deal with elder care issues. A senior program officer at the California based Smith Foundation. Then life intervened, and he's now living it, splitting his time between Kansas City and the San Francisco area to look after his mother. So thank you for coming in from California to be with us and looking after your mother here in Kansas City. And as half of our viewers live in Kansas. We want to make sure you have useful information on both sides of state line. Rounding out the cozy confines of our panel is the head of the Department of Aging in Johnson County, Tim Wolf. And to give you a sense that it's never it's never too late to reinvent yourself. A decade ago, Tim was a prison warden in the state of Missouri. That's quite the career change.

Tim. All righty. Janet. in some respects, we could call this, you know, as a report card on caregiving, in Kansas City. can I ask, then, can we go home early tonight by you reporting to us right now that we get an A-grade in Kansas City? And, in fact, things are better today than they were even a year ago.

No, I mean, you know, it's a matter of fact, things are worse. if you look at the the amount of resources that we provide to caregivers and to older adults in, in the Kansas City area, they're worse now than they were a year ago. You know, you actually were in the news yourself recently because you had a paid a smaller paid caregiver program, and that was a victim of federal budget cuts. So you had to tell staff, you're being laid off and tell people who are getting that service. They're not getting it anymore. Yes, we had an AmeriCorps senior companion program and are the only, senior companion program in Kansas City and have had that program for 30 years. And so literally thousands of low income older adults were receiving a very small stipend, $4 an hour to do this kind of of a very thankless work of caregiving for other low income, older, homebound individuals. And we got a memo in February that said that your language, your website, your program, your grant says that you're committed to equity and inclusion. So here's your choice. Either cease and desist and prove to us that you don't have that kind of commitment, or surrender the $350,000 program that we were supporting. Tim, are you feeling that same squeeze on the Kansas side? Yes.

We, we unfortunately have not had any programs cut at this point. However, we rely on Older Americans Act funding to support a lot of our programing. And at this point, the Older Americans Act has not been reauthorized, and we are in that limbo of what's going to happen from September and how many of our programs possibly are going to be cut. So, that is it weighs on me. It weighs on my staff because they're questioning, am I going to have a job? What kind of programs are we going to have to cut? And so fortunate me, we are trying to be proactive, trying to search out other funding sources, trying to be, collaborating as much as we can with other partners. Just so we can continue our services. But that fear is there and it's real every day. You know, we going to watch a little bit more of the documentary a little later in this program, but I will tell you that one of the things for me, who is who is not a caregiver was how all of this work, by and large, is being done totally unpaid. There's no help or aid. And yet Jalen, you've been doing this since you've been like eight years old. You haven't been caring for your mother. Give us a snapshot of the challenges of being a full time caregiver, when again, you have this very high profile job where you're dealing with everything from the stadiums to property assessments. It's, it's been interesting. And I will say, I think caregiving is my way out of the chaos of politics and government in and of itself. but I will say that, you know, my mother was a nurse for over 40 years, and I saw her take care of my, great great grandmother, my great uncles, all of these fantastic people who are strong and vibrant at one time. But then, sadly, age or disease catches up. my mother fell, in 2002 and broke her back. And so she's, not been able to, walk more than, say, 20ft, take a shower by herself, get her own medications, get dressed in the morning. but ever since then, you know, I said, how can you be doing all of those legislative hearings we see you on TV for? At the same time you're doing that work. Who's looking after her when you're at the Jackson County Courthouse? You know what's interesting? most of the time, my mother's name is Toby, and they like to say, Is Toby here? Because she's usually back in my office. Okay. I'm sitting there and taking notes and saying, well, you didn't say the right thing, so you have to do so. So you have to bring her with you. I bring her to work with me because, you know, at home she cannot make it to the kitchen by herself. And sometimes it's difficult for her to use the restroom by yourself. so she comes with me a lot of the time. some people say, well, your mom come to work with you is is difficult. But she's been a part of my life. And everybody say shape or form since I've been born. But her being at the courthouse is also a pleasant thing. But it also shows that we as young people, you know, I'm still fairly young, and you're taking you like 33, 33 and, but also showing that caregiving never stops no matter what's in your life, it's always going to have to take priority, especially those who can't take care of themselves. But you were in you had the opportunity to bring your mother to work with you. you have Margery Williams with the superintendent of the Hickman Mills School District. You've got lots of schools. You got more than 5000 kids. Never mind, never mind cantankerous staff and faculty. And yet you are balancing caregiving at the same time. How did that work? Well, I was fortunate at that particular time because my mother was still in her home, okay. But it kept me going from my home to her home because it was important for her to age in her home. So I just wanted to make sure that she had the similarities of a space that were comfortable, that were safe for her, to a point that we felt like. And we made a pact early on that when it became to a point that, she was not safe, then she would move with me. And she lives with you now. She lives between 99% of my house. And then she'll pack a bag and say, I want to go home. And so I take her home. I take her home. Feel that you keep that house, don't you? Yes.

We we still keep the house. it has to be intact. She knows where everything is, so we don't move anything. We just kind of straighten up. But I run into Marjorie at another event at the Nelson Gallery, and I'm just fell in love with her story because we were doing this program. But another component here, which fascinated me again, when we want to show dignity to those we're looking after, that her mother asked. I want to paint my house.

Yes. And your response to that was, we'll get it, paint it. I mean, whatever she asked. I mean, it's her home, and I want her to still feel like it is her house. It belongs to her. I know the importance of what it means to have McGarity. I believe that's a part of her being able to thrive. Is that when she goes home, she feels like she's in her home.

Yes. And it's not as frequent now as it was before, when I would come home and her suitcase would be by the door, I knew it was time to take her home, and at that time I could take her for a couple of days and bring it back. but now we do field trips, and so she'll go out and she said, well, my porch needs to be painted. So I said, okay, we'll get the porch painted. We plant flowers just like she's there, you know? but it's her home.

Yeah. Kelli, you have a high flying career in California. you are known as a national speaker. You go everywhere, and yet you're telling other people how to deal with eldercare issues, and then you confront it yourself because you're now having to spend time here in Kansas City to look after your own mother. I do, yeah, I wouldn't say that. It is. You make me make it sound like a burden, and it definitely is not. it's, it was a choice that I made, because my parents, were incredible parents, and I feel like that that is what I. They were incredible parents for me. So I owe them the same. level of engagement that they showed me. And I love that you say that because we're going to talk about a lot of problems as we in the media tend to do. It's always about the problems. But yet this should be also a celebration of what is an amazing role that people play. And when you see the entire documentary, you will see that people who. Yes, it's a it's a huge amount of work. we don't get paid for it. It feels invisible. It's socially isolating. And if people would not, swap that job for the world, why do you continue to be a caregiver? And what would have you what would make you stop? I will say there's nothing that would make me stop. because, you know, I'm bound by my faith. But also, as my friend just mentioned, the, dedication that I saw from my mother, whether it was living paycheck to paycheck when we didn't have a place to live. she always made sure that I was all right. And, you know, I will say I'm very blessed and in a place of privilege, and I can take my mother to work with me. A lot of folks do not have that ability to do that at all. And, I will say there's nothing that would ever stop me taking care of my mom. What happens if you don't even have family now? What happens to those folks who have not even somebody like you, son? Janet. Exactly. Well, I can give you a statistic that's a little alarming. What we know is that for older adults who don't have family caregivers, 50% of them will end up in nursing homes for long term care. For people who do have a family caregiver, that number 7%. The unfortunate reality is that long term care is unaffordable for most people. And so we know at Casey Shepard Center that people will age in place. They will they will live and pass in their homes. It's just a question of whether they will do it with dignity and support, which was what we try to do. And other organizations try to do, or they'll do it alone and isolated. I witnessed a Q health panel in Lawrence, and that on this panel was a a female director from Texas who said he can always tell if somebody has been looked at home, looked after at home or in a nursing home because the people in the nursing home are in much better shape, he said. Much better shape. Why would we expect that you are doing mandatory? You're looking not only after your mother, but you're also looking after your brother. Now, isn't that correct? You got two people who came for that. You're doing this. They're my roommates. I know, but you're doing all of this. If they were in a assisted living facility or a nursing home, you're going to have a team of people looking after.

Yes. I think there's a difference, though. And, knowing that I'm doing it because I believe it's something I'm supposed to do and that I want to do, as opposed to not having the opportunity or the space or the wherewithal to be able to do it. There's a difference in the documentary, you'll hear the word burnout mentioned quite a lot, and you do anytime you look at forums online about caregiving, how do you balance Jaylen looking after your mother without comfort or missing, your own health? At the same time? Well, I have compromised, my own health and well-being, to take care of my mother. you know, one thing I do want to add is that I took care of my grandparents as well before they passed away. But we looked at, you know, going into a nursing home some of their friends had. And just the insurmountable cost of going into anywhere that is decent, that is clean and helpful. That's such a worry for folks, in that predicament. And so, you know, the idea of being near family is so much easier, especially when I saw with my grandparents and my mother, instead of people that she didn't know coming in and trying to help them. But with my mental health, you know, the mental health side of it is what you and of course, your physical health. But, you know, sometimes and I'm a good baker. And so that doesn't help me either way, shape or form, but, you know, going in and seeing a therapist. But even if it's just about. I'll give you a quick story. My mother, had a blood infection last year that took, a lot of her strength. And she, was at Key Hospital for a while, and she'd come home and things were a little bit rough, and it was snowing out. I thought, I'll just walk outside. Just taking those few moments to just walk outside and breathe because the sun's still out there. It was snowing. It was beautiful weather.

It's raining. Whatever it is, life is still moving and life is still beautiful. And that's how I see it with my mother. she's still this wonderful, fantastic, brilliant lady that. Yes, sometimes we, you know, I'll call her to be upset with me or I'll be upset with her. But just taking a moment for yourself to go listen to a song or to watch a silly show whenever you can, find those moments that would help to reinvigorate you, to realize that you have needs, but also that you are important, that you have to remember that your mindset when you're in a good mindset, you're the people that you're helping and you're showing love to get that love that you're showing to yourself. And so that's so important because I know a lot of caregivers feel like, well, I can't do anything.

They need me. And if I do this, they're going to get worse. Just taking those few moments will make a world of difference. And in doing the show, we heard from a number of other was already who said they're feeling totally overwhelmed. Tim, what is the first step you can take first place? You can go to possibly get financial help on just some emotional support. Having been a caregiver and spent the first part of this year in a in a caregiving role. And for me, it was getting up at 5:00 in the morning while everybody else was asleep and going and walking three miles gave me a sign that I could, you know, I was taking care of myself physically, but it also gave me that that chance to breathe and really think of of what I needed to do when I got home and instead, for our individuals, what I tell people is financial resources are really hard to come by. You know, we're very fortunate right now in Johnson County. My office, we have two divisions within my department, and one of those is a division that we help people with utility assistance and, resources and stuff like that. So I tell caregivers when they're starting to struggle or starting to have financial problems, you know, contact my office, contact us so we can see if we can help you. There are some programs, across the city that are like that, but they're very limited. When you go into the financial part of this in just a moment, because I think that is a big part of this. People are racking up credit contact you nodding yes okay. We're going to get Ahold of that because we have a great story from the documentary that Marjorie we heard about, you know, getting up early and leaving, you know, while other people are asleep. Do you feel comfortable leaving your mother at home without anybody else there? I do feel comfortable, and I find those times, and usually it's like you said this early morning before anyone wakes up, I'll ease out and I will walk, or I'll just go to my car and sit in it at the park, watch the sun come up. But I find those moments for myself, because it's important that self-care is a part of what you do, because you can't do the work without taking care of yourself. So how do you do that? Oh, at one point in time every month I was able to leave, and whether it was a day trip or a weekend, I could get away to rejuvenate. But then I found myself being so exhausted and just getting them ready so that I could leave. I was just like, I'll just stay home. And then I had to talk to myself and say, that's kind of healthy. You need to figure out a way of getting out of here, because I always tell them, if you don't let me take care of myself, I can't take care of you. I've learned to schedule things so that I can make sure that is, I'm doing the check out list that my name is on the check off list. Also, because it's easy to lose yourself. Yeah, and everything else is okay. I got a lot of nodding heads when we talked about the cash part of all of this, so I want to get into that right now. And that's a big part of Bradley Cooper's documentary coming up. he's, you know, he tells his own personal story, which is a powerful one by itself. But he looks at stories across America. Here's one we want to highlight for you briefly, right now. I am Janet Baker, an isolated horror story? Or is that a common frustration that caregivers in Kansas City have to deal with as they try to look after their loved ones? Well, it is a common problem. Unfortunately. We're fortunate that we have a an outstanding, licensed social worker who works with us and tries to help people, have access to other community resources. But at the end of the day, there is not enough out there. There's not enough support. There isn't enough support for utility assistance for rent. You have to understand that older adults are the fastest growing homeless population. That's that simple in my mind, right? I mean, that is the people who have built our community and we are finding that we, you know, we've lost the $350,000 caregiving program. We've lost $150,000 in Meals on Wheels. We're only serving half the number of Meals on Wheels clients. We were that just hit the headlines the same way, because we focused on layoffs and federal workers and other bigger things, these smaller things we don't hear about as much. No, we don't. And that's that's the reality is that it is it is a series of small things that either make or break a life. We saw in the documentary that the lady in that particular clip talking about $30,000 in credit card debt, just caring for her husband. Is that common? Yes.

Yes.

Okay.

Jalen.

Yes. I will say, you know, my, I come from a family that was a teacher and a union worker and a union advocate. and my grandfather working for the post office and then also with the union, and seeing, you know, them trying to get on Social Security disability, you know, that called to Medicaid. I, you know, that sound is more of a horror feeling than anything else. And to hear that cold, you know, correct. And God loved the people on the other end of that. And all this is, is if it's a failure of policy and it's policy that is holding back us being able to take care of people. And, you know, I just want to point this out. You know, I, I had a different job and I love that job. And I saved and try and do the right thing. And, we've gone through my savings because taking care of my mom. But I do it all over again. And, you know, now if I can get someone to sit with her, we've got her a thing that if she gets out of the bed and falls, you know, I'll get notification on my phone. But that's why I drive Uber every night. I go out at about 9:00 and I drive, and as long as I can, just so that we can take care of, you know, the most basic things her medications, making sure that she has, incontinence, items that she needs, just the basics, but it's it's a real draw. And that's another thing for caregivers to understand, because you have to not only be a doctor. the nurse, their, their pastor, their therapist, but you also them have to make sure they are financially stable. And that is something that is frightening, especially when you don't have a background in finance. And also there are advocates for advocate if you live and I mean, Kansas City is, you know, a major metropolitan area, but if you live outside of a major metropolitan area, the resources are even more slim. My father passed away in 2018. He lived in Manhattan, Kansas, which is not that small of a community, but I remember being in an emergency room where they said that, you know, there were no beds. He was writhing in pain. And I basically turned into Shirley MacLaine from In Terms of Endearment, screaming at them, being like, what do you want me to do, drive him around in my car till tomorrow morning and bring him back? You know, I mean, like, there is there are no resources for caregivers in rural areas, and those resources are going to be even more depleted. Can I say that there are places that have done a better job? Right. There are other countries that do a better job of of including in these right, caregiving as Social Security earning and, you know, for lack of a better term, indeed, here in America, we have what's called the feminization of poverty. Now, I give all kinds of credit to these three men who are caregivers because the the average caregivers, a daughter, a grown daughter, they're two. You actually have a statistic. What is the age of the average caregiver? 49 year old daughter okay, right. And here's the reality. This feminization of poverty is that it's women who are the childbearing, years who take care of young children. They're out of the workforce. Then they have a few years in the workforce. Then they are out to take care of aging parents. Then by the time they are of age and need resources, they don't have the Social Security to to lean on. Right?

That's unfair. That's unfair, and it's wrong. And we could fix that. In fact, the lifelong loss to a primary caregiver loss and Social Security loss in wages is about $300,000 over a lifetime. That's insane. Okay. We've talked a lot about the point. The problem is, I think most of us are here because we're looking for answers. Perhaps a bit of cash, some help.

Hello. Tim mentioned your office. If you're in Johnson County, you can call the Johnson County Department of Aging. There may be some cash available. Where else can you turn? If you're in Kansas City, you're not in Johnson County. Is there any financial resources available? Well, there I wouldn't say financial resources. We use the little ducats. We have to provide in-home services to provide meals on wheels, that those things that allow a caregiver to step out when we step in so a caregiver can step out, we leverage every resource we possibly can to do that. And there are other agencies that do that as well. Jalen, I happened to note that last November when we were voting for president and all these other big offices in Jackson County, they were voting for a senior tax. People were increasing their taxes and would bring in $8 million a year to help with senior programs and perhaps some caregiving. That was in November. Whatever happened to that money? And so, well, if I can, the amazing people that were a part of that campaign and got that across the finish line, because as everybody knows, Jackson County and our property taxes, we keep talking about to blue in the face. But that 157 to 43%. And that just shows that people care about seniors and they want to take care of seniors, because seniors are the highest for the largest population in Jackson County. now, with those funding, I will say. And I'm telling you, be this a lot of politicians have really big egos, and this fight egos, egos. but but the and the thing is, is that if we would have power and the county legislature and the and the county executive could not come to an agreement in November or December of last year on a budget, and because we didn't have a budget, we couldn't really move forward with understanding the collection and setting up the program. Long story short, none of that money is being distributed, has it? No.

Well, and I will say this, it would take till 2026 okay, for the money to be distributed. But but the issue is now we are far behind from having that program set up and ready to go as soon as January 2026 comes on. So I don't know when we'll be able to get everything online so that we can help the people that need it the most. And I would add that only 2% nationally of philanthropic dollars goes towards aging, because there is this mis conception that federal dollars cover everything for aging. And that in and of that is not true. Yeah. and is definitely not going to be true after this current budget is passed because older American Act funds are going to be cut considerably. And Kelly, by the way, is instrumental in bringing in funding and grants for elder care issues across the country. Will you be giving us your private cell phone number so we can tap into some of that cash this evening? Kelly, I don't fund in Kansas and Missouri, but I do. but I can tell people, the folks that do fund this, Janet, went to other countries in the world to say they were doing it better. However, you can look what happens elsewhere in the country as I did. I see actually a lot of states provide paid can't give us support at the state level. Even if you, the daughter or the spouse, you actually can be paid for doing that and your own state.

There of California, that's doesn't. No.

I funded in 14 different states and I funding caregiving both family caregivers as well as direct care workforce. Some of the folks in the video and, it's possible you've worked in government on both sides of the state line. Tim, how close are we to getting that here in Kansas and Missouri? I think we're a long way away from that, just to be honest. And and I'll say that because we've talked about policy and decision makers, I think one of the biggest obstacles is, in some states and Kansas is one of those where they have used this capable person policy, which basically is if, I as an assessor, I'm talking to you and ask a question about, you know, can can you I'm going to do this. Well, they can't do it, but I do it for them. Okay. Well automatically they have resources. So therefore they're not eligible for funding for that. And so I think we're a long way away from it at this. You asked what other services could be provided. And Tim, I talk about your caregiving. Yeah I support Greg. I think one of the things that's really important is what we've been doing with caregivers also, is we've been doing caregiver support groups, and it's a way for them to come and be around other caregivers and be able just to talk and and get stuff off of their chance to just feel like they are human again. Anybody in our audience been to caregiver support groups with a valuable they were okay, it's not just a talk shop. And you say, oh, okay, nothing really happens. You felt that was beneficial okay. Very good.

By the way. You know, when we saw the video and you saw them calling to Medicare and some of the things you've already talked about is how complicated all of this is. And in fact, it's so complicated that Rachel Hines was so, so infuriated. She decided to start her own organization. It's called sandwich.

Casey. Tell me when. So people call you and email you with their caregiving needs. Was the number one concern or question that people have when they call you Rachel? Well, I think the biggest thing is respite. we do have a small respite fund that allows us to do, resident vouchers, but it's not enough to give sustained and meaningful breaks. and honestly, if you weren't rested, it's not going to happen in the house. you got to tote your loved one somewhere, which is just more work for you as a caregiver. Or you have to pay hundreds of dollars, for a caregiving vacation. If you could wave a magic wand and initiate a new program that we could start tomorrow. What would that be? That would help caregivers? Well, we would love to be able to offer a volunteer respite program or just something to give caregivers a break. they just work entirely too hard for very little. they don't earn anything. They make great sacrifices. mental health, physical health. just, and the contribution they make is invaluable. so.

Well, Rachel, thank you so much for spending this time with us with sandwich. Casey. We'll put it on our website. You're getting the card here from the. See, see, action is happening. Rachel, this is got his private cell phone number. you'll be you'll be coming to the library next time in a Rolls Royce. I just okay. Thank you very much. So we'll rest.

We can rest. We can really is giving people a break. Just giving a moment of time. How does that work? And how is it being provided in Johnson County? It has been freedom. Jones County, we are fortunate with our own Americans Act funding, as well as funding to the state legislature to be able to provide, respite for caregivers as well as, you know, respite for an individuals. One of the things that's really impressive that happened in Kansas in the last legislative session is they approved the Kansas respite for Alzheimer's and Dementia program, and it is a program that specific for caregivers of individuals who have a diagnosis and where a probable diagnosis of Alzheimer's or dementia and the caregiver can get up to $1,000 per, care recipient. And it's very easy. It's administered by the the area Agencies on aging.

And, there's a one page application and then there's a one page, doctors and, and attestation form and and they come through and, and it's new, but it's great if you're living on the Missouri side of state line. Jack. Well, we don't have that particular program. I would love to have resources for that. What we have, Shepherd center, is and instead of the senior companion program that we had to surrender back to AmeriCorps, we have a friendly visitor program. And I'm always looking for volunteers. And it's much like we used to visit, folks at church who couldn't get out. We are looking for volunteers who will spend even a few hours, in someone's home, give a caregiver some respite, and and to be, to be someone there for the isolation and loneliness that homebound older adults feel. So we're always looking for volunteers for friendly visits. Jalen. I just wanted to mention that Jackson County, I've been a fan of what you've been doing and in Johnson, and we need that in Jackson County desperately. all we need is a Jackson County legislature that always, as I will say, this legislator has and it keeps anyway, it doesn't make it to fruition. We also have Kansas City, Missouri City Council members with us. Yeah, I'm sure I'm and I'm sure they would partner with me if I could just get to five on that legislature. But but I wanted to mention as well is that all these programs are fantastic, but we also have to look at, like with my mother, she fell when she was 38 years old, and there was no programs for someone that young. And so it took my grand parents said that their savings to take care of my mother while she waited those two years for Social Security disability, young families to take care of children. this, this, this idea that we have to wait until someone is a certain age to provide any type of help is wrong. And we have to I mean, as my but all of you have mentioned, but especially with the idea that, you know, if you say something. I mean, I went through that with my mother just trying to make sure we were going to get her incontinence, deals, and supplies that she needed because I said, you know, I can help her to the bathroom. Oh, so she doesn't need a walker. And I thought, oh, dear Lord, I should not have, but it's. But when you're in those moments where you don't have anybody to help you, it's so difficult to go through the process that government makes you go through. And also, I want to say we have to be very careful because there are signs up all throughout Jackson County that will say you'll get paid if you take care of somebody at home. And those are scams, and people are trying to scam people when just by getting a little bit of hope and there's not, we're going to take a nap. I have another short clip showing a story from the documentary The Bradley Cooper's Putting Together on Caregiving for PBS. If you have a question you can ask in 20s or less, I will come to you with that. I'm going to come to you, but let's be respectful. We got a lot of people here. Let's go to Back to Caregiving from Bradley Cooper. Is that the feelings that you have there, Julie? Oh, yes.

I mean, it's, you know, but. Sorry. my grandmother passed away in a very dramatic way. I was taking care of her, and, we ran away to the doctor's appointment, and I remember we were coming from Blue Springs, were going under Nolan Road, and I look over and, she's having a seizure. She grabs my hand and, she passes away right there in the car, and and and the same thing happened with my grandfather just trying to get him out the door. We just were going to a doctor's appointment.

I worry. You know, one thing I know you know, not my therapist, but, Oh, we did, but, you know, one thing that worries me to death is when I leave my mother, like, even tonight, we have a neighbor that's with her tonight. But just the fear in my heart all the time that they're going to call and say she's passed away. And that is such a real and just awful feeling. I know so many people in this room and and people are watching go through that because you've taken care of someone, you've seen them in their strongest points and their weakest points, and you see them every single day. But in just a second they can be gone. And there's actually a name for that. It's called anticipatory grief, and it's something that's very common among caregivers. Margie, was that your feeling too? Yes it is. My worst fear was that one day I would walk in the house and that she would be gone and she would be by. And I can just share with you that when I agreed to bring them both home with me, I did not know all they would until, and I often questioned if I had made the right decision. Was it for them or was it for me? And I struggled with that. Even when people would say, what do you need? I didn't know what I needed. making those calls and listening to that tape, I went through all of that with, you know, they're not eligible for services they make too much money. I used to think I was a pretty intelligent young lady until I had to fight the government for for health care, for my family. And then I realized that, you know, there there are no lines drawn. Everybody is treated the same. But if you don't know what to ask for, right, you just put at the end of the line, I can promise you that when we do have an opportunity to propose for the senior levy, caregiver support and caregiver programs will be paramount. There just isn't enough in this community. So I want to honor you and respect you and your time. If you have a question, I will come to you. Yes, sir. Would you mind coming over to this little spot for that? I just want to know where the resources are, like Jalen is talking about. My son had a stroke at 41. He's 43. You would be surprised how many resources are not available for young people. And that is a growing segment of young people having strokes, heart attacks. I've seen it. Family Caregiver Alliance is one that I personally fund. they're based in California, but all of their resources are available nationwide. I also have a colleague that funds in the disability space and so I will get with her. And if you shoot me an email, I will get, some resources. And I do have his business card.

Are you. Yes.

Thank you very much. you know, we put a lot of pressure on government. Why aren't they doing that? Why aren't they way the Jackson County legislature? Why is the state of Kansas? Why is the state of Missouri? What about our employers? are the employers doing remarkable things and being supportive of caregivers in ways we may not know about? They are, in many cases, like, mostly through advocacy. I would say, California is is moving in the direction of universal family care because of sandwiched generation, largely because of folks like, caring across Generations, which is highlighted in the video they are pushing for, folks that have children and older adult parents, that are both, feeling the pinch. for those folks, that are taking care of both. And so, states are doing more and more, and in November, voters in Missouri supported a minimum wage increase and paid paid leave. but not any longer. Yeah, I yeah. So I guess people need to talk to their elected officials about that so they listen to their voters.

Okay. Yeah.

Real quick. There are, some agencies that do provide trigger relief. Johnson County provides their employees up to 80 hours, a year for sugar relief. And there's some cities around here that if you work for the city that they will provide you, 6 to 6. The longest, the most I've heard is ten weeks of caregiver leave. And so they are starting to see that more and more. I'll take one final question.

I'm going to run over here. I mean, production crew is going to be very angry with me, but I'm going to do it anyway. Thank you.

Oh, absolutely.

I've got you. you can stay on the floor. There we go. I got you, I got you, then I need a caregiver. Yes, but now the question is. And she kind of wing the, the question, the percentage of caregivers, whether they're paid in nursing homes are actually taken care of. People is predominantly female.

Correct. And I would say quite. And, Oh.

Oh, apologies to you, sir. And you and you, but what can we do maybe to get the guys off the sidelines on that deal? Thank you. All righty. Boy, I think now I will say this that it is predominantly women, but it's it's getting much more so, to where it's about 60, 40 there about 40% of caregivers are men. Yeah. So so we are finding more fathers, more sons, more brothers that are willing to step up as all of these three gentlemen have. One of the terms that I keep thinking of is education. You know, we're talked about advocacy. We have to educate. We've got to educate our kids. We've got to educate our families. We going to educate each other about what it's like to how how beneficial and joyful it is to start getting older. And, you know, instead of talking about all the bad things, talking about the good things that people want to work with, individuals who need care and and how joyful it is to show up for the people you care about. Yeah.

You know, like to I wouldn't give that up for anything. But in hatching this whole project, by the way, Janet Baker and I met at our house of the barbecue and we talked about all of the different things and the things she shared with me. Nick, we need a celebrity champion, she says. And in a sense, what we're having nationally is having Bradley Cooper being part of this is going to see this project, see what the pain, the challenges and the joy of caregiving is to an audience that would never have seen it before. So we're grateful for that. But what about at the local level? And you you talked about Eric Stonestreet. Come on. You talk about that.

This wasn't he also a caregiver? He is a caregiver.

And he is a local hero. And if he would be willing to be our Shepherd center celebrity, we'd be more than happy to entertain that notion. So we need we need the celebrity. So you can be all reaching out to find our celebrity, caregiver. And here's why I say that. We have, of course, children, puppies, all the things that all the celebrities get around are wonderful and critical and important. But there is a real law as to the older population being forgotten, invisible, the invisible army. We need someone to care about seniors who can lift us up to a platform where we can raise $4 million and we can't just say it. You have been watching the Invisible Army caregivers in Casey with the head of the Johnson County Department of Aging, Tim Wolfe, the man with the most important, valuable business card. Kelly Kent, Margery Williams, caregiver and former superintendent of McMinnville School District Jackson County Legislator Gillian Anderson with an incredible story to tell, and I'm never going to forget about you. Also Uber driving. I was sure you think when you do this, you look at people's backgrounds and you got the story right. thank you for revealing parts of your life that I think is going to be very valuable and make people feel included and and understood and seen. Thank you for doing that.

And, Janet Baker, thank you for being the glue that helped make all of this happen. The head of the Shepherd center here in Kansas City, And I'm Nick Haynes. If you're watching at home, stay tuned for some more tips on how to navigate, particularly the financial stress of caregiving right after these credits from all of us here at the auditorium of our partners here at the Kansas City Plaza Library, be well, keep calm, and carry on. Becoming a caregiver is a responsibility that can sometimes arise unexpectedly after the birth of a child with a disability, or the health decline of a parent or spouse. Caregiving often comes with important financial considerations. Hi, I'm Jamie, certified financial planner and member of Kansas City's Financial Planning Association. Here to share some insights on the unique challenges faced by caregivers. Health care and supply costs for caregivers can add up quickly, and your income may be reduced as you have less time to work. According to AARP, caregivers on average spend $7,200 of their own money on caregiving expenses annually, first to avoid being overwhelmed. Small steps like creating a caregiving budget and tracking expenses will help you identify patterns and opportunities to plan ahead and seek support. Second, understand your rights and benefits. While most standard health insurance plans like Medicare do not directly support in-home caregivers or family caregivers, there are some exceptions and other options for assistance. Medicare Advantage Plans Part C may offer some coverage for caregiver support and starting in 2025. Medicare Part B will cover some training and substitute care for family caregivers. Additionally, veterans benefits may cover some home and community based health care services. Support through Medicaid is available for those under a certain income threshold. Medicaid provides comprehensive health coverage for low income individuals, pregnant women, the elderly, and people with disabilities, often including services not covered by Medicare. However, it's also known for low reimbursement rates to providers, potential limited choices for beneficiaries, and complex enrollment processes. FMLA is a benefit that might be able to help the Family Medical Leave Act, or FMLA is generally unpaid. But some organizations have specific leave policies or will allow use of flexible work arrangements and or vacation and sick days. There are also some caregiving grants that may be available in your area. An additional consideration for those caring for a person with an illness or disability is making decisions to support their own well-being area. Agencies on aging often offer respite care, individual counseling, support groups, and caregiver education. Elder care locators connect caregivers with local support options such as meals, home care, and transportation. Local hospitals and online platforms may provide caregiver support groups, while religious organizations may also offer guidance and support. National caregiver organizations like the Caregiver Action Network, Family Caregiver Alliance, and the National Alliance for caregiving provide valuable resources for illness specific support. Organizations like the Alzheimer's Association offer specialized resources and veterans can access services through the VA Caregiver Support Program, including support groups, counseling, and training. It's important to connect with an attorney to provide you legal recommendations to support you on your caregiving journey. An attorney can provide valuable guidance on estate planning and crafting power of attorney or Poea documents. These documents empower caregivers to make crucial financial and help decisions, and it's recommended that everyone have a poea by age 18. Being a caregiver is challenging, but with the right knowledge and support, you can ensure that both you and your loved one thrive. For more information and resources, visit Kansas City pbs.org. Slash caregiving.